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Give Me The Facts

When they are unanimous in recommending a treatment, then it seems to me that other parts of the treatment plan should facilitate having that treatment occur. That’s not what happened, though. While I contemplate one particular situation that I’m currently facing, it occurs to me that there are broader implications that apply to other issues in healthcare.

From the standpoint of everyone pushing me to have surgery, it’s a good thing that I missed my RA meds while hospitalized. Medicines that increase a patient’s risk of infection don’t make surgeons happy; that’s why surgeons tend to recommend discontinuing methotrexate one-two weeks prior to surgery, and Cimzia four weeks before surgery. If the goal was to convince me that surgery is needed, it would seem that staying off the RA meds for another two weeks would be the most efficient way to get the surgery done as soon as possible. Instead, I was given instructions to re-start the very meds that a surgeon will want me to discontinue before he’ll operate, prolonging this entire ordeal.

Apparently it’s important that I have surgery… but it’s not.

My doctors could have said, “The best treatment for this is surgery. Ideally, you’d be off your medications for a month first, so you only have two more weeks to wait. If everything goes smoothly, you can resume your meds a week later.”

Given my reluctance to have surgery, they could have added, “That would be my recommendation. I know you don’t want to have surgery, so why don’t you think about it some more while trying your non-invasive method. I’d hate for you to have to wait another month if you change your mind or this other method doesn’t work. In two weeks you’ll know if your method worked, and then we can discuss the best way to resume your RA medications.”

Instead, it seems that I heard, “You can resume your meds in a week. As to the other issue, the best treatment for this is surgery. You’ll need to talk to a surgeon.” By implication this means that about the time the mtx & Cimzia start working again, I’ll have to discontinue them for four weeks, dragging this entire process clear into next month.

It’s perplexing.

This week I’ve seen three doctors, including my family physician. After his hard-sell pushing surgery while I was hospitalized and his discharge instructions including, “Come see me in 2-3 weeks; I will be writing you a referral to a surgeon!” I expected that at my appointment I’d be handed a referral and given some facts on why that would be the most prudent course of action. It threw me for a loop when that didn’t happen.

When I asked my doctor questions, all his answers gave the worst-case scenario and expanded to horrible possibilities I hadn’t even considered. I sat there puzzled, thinking, “I’ve nearly reconciled myself to the idea of talking to a surgeon. That doesn’t mean I’ve agreed to have the surgery, but I’m willing to listen. Now it sounds like you’re trying to talk me out of it!”

This all very confusing. My doctor is usually excellent at answering questions. In fact, when I write a list of my questions, usually I ask just one or two. My doctor is so thorough that he answers most of the other questions, too, without my having to verbalize them.

This time, I only wrote a few questions and told myself, “Oh, he’s so good at explaining stuff, he’s sure to cover everything I want to know.” He didn’t, and the more I think about it, I realize that someone else can’t very well answer my questions when I don’t even know what my questions are.

Whether it’s surgical options, or RA treatments, or anything else, I want solid information so that if things go wrong, I can look back in hind-sight and still believe that I made the right decision, regardless of which direction I eventually choose. Give me the facts.

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2 thoughts on “Give Me The Facts”

Warm Socks, I’m not a doctor and I don’t want to intrude too much but if you have been studying how the body works you have likely found out by now that the gallbladder acts as a gateway for all sorts of things produced by the liver and pancreas and when it doesn’t function well, things can and do go horribly wrong. Did they do a function test? Even without stones, a poorly functioning gallbladder can endanger your life. And delaying surgery can seriously increase the risk of serious complications. I understand your reluctance to have any surgery or part with any body part – after all, why would we have it if we didn’t need it? But I know from experience that if it is diseased this can be the right choice. If they haven’t done a function test, do request one. Your function needs to be better than 30% to keep that gallbladder from what I understand. Otherwise, it is blocking the correct function of your liver and pancreas – much more dangerous. As you have discovered, pancretitis is extremely painfull and can be deadly. I hope that the doctors can give you some less confusing advise – it sounds like there has been a lot of waffeling going on.
I likely shouldn’t be trying to convince you that having your gallbladder out is a good idea since I don’t really know all the facts, but I just don’t want to to wait too long long to decide to have the surgery since that can make it so much worse. So I’ll just shut up now. Please forgive my forwardness, and feel better. I hope this works out well for you!

Thank you, Leslie. What really concerned me was learning that removing the gallbladder only gets rid of the stones that are stuck in the gallbladder. If there are any stones already in the common bile duct, or any stones dislodged during the surgery, then those can still cause problems. I have a friend who nearly died during gallbladder surgery due to a stone that they didn’t realize was blocking a duct; I think I could eliminate a lot of that concern by just discussing that with the surgeon. What I find worse (long term) is that you can still form new stones because they’re “bile” stones, not just “gall” stones, and bile is formed in the liver. People can, and do, sometimes form those stones in the liver after having their gallbladders removed – and then have the same problems but now they get stuck in the liver, too. That’s one of the questions I did think to ask my doctor, and he confirmed that it’s true. He also put the incidence at about 1:1000. That’s the kind of facts I want.

I’ve had gallstones before, and always had good luck getting rid of them. With GI & rheum’s approval, I’ve tried that method again. The idea was that I’d then have an ultrasound to verify that it worked and the stones are gone. I had another imaging study this week (and will soon be glowing in the dark, I’ve had so much radiation) so that can be used instead of an u/s. If it says that there are significanly fewer stones, then I’ll keep repeating the oil/oj procedure until all the stones are gone. If the stones are still packed in there like sardines, then I’ll be having surgery. Given how I’ve felt the past two days, I suspect that I’ll be having the surgery :(